Flying by the Seat of My Pants

Geocaching, Nik style: Searching Without a Clue

I’d like to be able to report that things have miraculously turned around and that Nik is sleeping through the night. Alas, I made a promise to myself not to stretch the truth that far. Sleeping through the night seems to have become a distant memory for Nik and me; each night he drifts off to sleep fairly peacefully and each night he wakesscreaming in pain or distress in the early morning hours. Sometimes it happens more than once a night; sometimes he is awake for just a few minutes and others he is awake for hours. The only commonality we can find, so far, is that there seems to be a pain trigger.

We still don’t know if the pain is the result of Nik’s very different intestinal anatomy —the combination of his congenital malrotation and it’s surgical repair —in the sense of the layout altering the functioning of his bowels, or if the functioning of his bowels is being affected by external forces such as diet, stress, infection, disease, etc. The net result is the same: Nik’s bowels have stopped functioning normally and now need assistance to keep moving.

If that were the only issue, I think we could deal with that. However, whatever is at work causes him such discomfort that he now wakes screaming. The pain seems to trigger an adrenaline response —you know, “fight or flight”— which, in turn, actually slows the intestines further. When the body is in that state of arousal, blood flow is diverted to more critical functions than digestion. I can’t prove it but I wonder if Nik’s constant state of “fight” over the past few years has contributed to the development of the paralytic ileus which recently landed him in the hospital.

Which leads me to another pondering: Is there a reason why Nik produces so much adrenaline? Is there an endocrine dysfunction (that is one area that’s never been checked out)? Could allergies be causing this response? No matter what the cause is, Niksdad and I need to find some way to help Nik get it under control. If we don’t, the potential exists that he could do more serious harm to himself when he’s in the midst of these “panic” episodes.

Since we came home from the hospital, Nik’s ability to cope with the slightest of changes has been practically nonexistent. His knee-jerk response to anything frustrating, painful, unexpected, or upsetting is to revert to punching himself in the face as hard as he can or kicking himself in the shins. You’d be amazed at the marks he’s left on himself. I won’t post pictures because that would be disrespectful of Nik. But I can tell you that the bruises and marks are so bad that both my husband and I have serious fears that someone will see us out in public with Nik and call the police because they think we are abusing him.

I have to tell myself that this is a temporary situation. That Nik’s reserves were so badly depleted by the physical toll of his hospitalization and by the energy it took for him to stay present during that entire ordeal. And he really did stay present. I witnessed some serious behavioral regressions during the week in the hospital —not jus the SIB’s but the need to bite and mouth things in ways he hasn’t in a long time, the need for specific toys or a specific video to play over and over. He even reverted to chewing on my watch for comfort and now refuses his chewy tube —until recently his favored chewing item.

Nik got himself so worked up in the hospital that he could not fall asleep unless I was actually lying in bed with him. Once he fell asleep, I would delicately extract myself and try to catch up on emails or simply walk around a bit to stretch my legs. Inevitably, he would wake in the night and get hysterical unless my body was right next to his. That struck me as the most notable behavioral anomaly; since he came home from the hospital at the age of seven months, Nik has never slept anywhere except in his own room in his own crib. The only time he’s ever slept on or with me was when he was still an infant and would fall asleep after a bottle or a tube feeding. That, to me, was a sign of how stressed Nik was.

Since we’ve been home, Nik’s readjusted a bit to his old sleep habits. The first night he needed me to sit with him —one hand on his head, the other on his back since I couldn’t fit in his crib— while he mouthed my watch until he fell asleep. Then, it was just the hand on the head and the watch. Then, the watch alone. The past two nights, he’s been able to go to sleep fairly easily without my presence and without my watch. He’ll take it at first, mouth it once then he gives it back to me.

I know that the more we return to his normal routine the easier his days —and nights, I hope —will become. The transition is just as difficult for us as it is for him. And yet, through all of the behavior regression and the stress, through all the turmoil and disruption to his routine, Nik has continued to make progress in other areas.

While we were in the hospital, Nik learned how to sign “Yes”and understands how to use it. That alone has been a lengthy journey for us. Now, Nik can answer with a sign when I ask “Do you have an owie in your head/tummy/wherever?”It has opened up a whole new realm of communication for us and may be able to help us learn more about what Nik feels and sees and hears —literally. I’ll be curious to see if we can use this new communication skill when we see the eye doctor on Thursday; we may actually be able to get a better sense of his visual acuity.

And eating. I guess his forced regimen of no food intake for the first few days in the hospital really made an imprint on Nik. We had already been cautious about what we let him have prior to going to the hospital; we knew something was brewing and didn’t want to muddy the diagnostic waters at all. The result has been nothing short of amazing.

Nik has begun to tolerate more textures and to feed himself bits of things like goldfish or graham crackers. He’s mastered the art of eating with a fork or spoon almost by osmosis. And he now sits at the dining room table with us and demands exactly what we have on our plates —on his own plate!

Yesterday, for the first time ever, Nik even took a tentative bite out of a soft cookie during snack time at play group! I know this because I felt his teeth brushing against my fingertips as I held the cookie.

I guess you could say that some things are pretty much status quo and others are barreling ahead. Is it any wonder then that I am constantly feeling that the foundation beneath my feet is unsteady? It seems, lately, I’m not quite certain what to expect and the changeability is tiring.

And yet, oddly enough, I remain highly optimistic that there are answers to be found, ground to be regained, and new frontiers to forge.

12 Responses

Oh Beth, what I wouldn’t give to make it all go away! I wish there was something more, something tangible to offer you. Right now, what I have are hugs and support and confidence in you and Niksdad to figure it out—it really isn’t supposed to be this hard. xxk

Far as I’m concerned, you & Niksdad win parents of the year, for not only motoring through such a stressful time, but for your ability to label your feelings honestly about the situation, and also hold onto more than a grain of hope in the process. YOU. ARE. AMAZING. XOXO

It must be so heartwrenching to see him go through that. It’s heartwrenching for me, and I’m way over here on the other side of the internet. You are such an aware and thoughtful mother; hang in there!

oh, friend, i just want to help. i know how you feel just wanting to help Nik; I want to help YOU help Nik. I just keep thinking we need to harness the power of the Internet to find the doctor out there somewhere who has the magic insight… or have I seen too many medical dramas on TV?

You are a beautiful example, a role model. Thank you for sharing your stories with us all.

Oh, I really hope things settle down for both of you! Seeing him hurt himself must be so hard to watch. We’ve had mild versions of that, and it really gets me.

It is so amazing that he can answer a question like “Does your tummy hurt?” That is so important…it’s so hard when you have to guess at what is hurting, and have no way to ask. And that’s also great news about eating more textures.